Interview: by Sean Noah
Daniela Lee was diagnosed with MS at age 40. The disease limited her mobility and hindered the active lifestyle that she previously enjoyed. But thanks to BalanceWear, she is surpassing the limitations of her diagnosis and reclaiming the activity and independence that she once took for granted.

How did you first hear about the vest as a potential therapy?
I read an article about the BalanceWear balance vest in the National MS Society’s quarterly newsletter. The article described how the vest could improve balance. Given the fact that balance loss was one thing that I had been suffering greatly from, that was enough to get me interested. I looked up the BalanceWear website, and reached out to Cindy.

What was the fitting session like?
Cindy Horn from Motion Therapeutics put me in touch with a very helpful Kaiser physical therapist in Richmond – Judith Fairchild. The fitting session was fast, but also uncomfortable at times – the initial pushing to assess my balance made me dizzy and very fatigued. I had to sit down and rest. Then she told me there were a couple more tests with the vest on. She moved the weights around to places that made sense according to my specific balance issues, and then said that she was going to push me again. I was already thinking “I don’t want to be pushed around again – it’s so uncomfortable!” But then she pushed me and it was a night-and-day difference. I was still a little wobbly, but I didn’t need to reach out and grab her; I was able to catch myself. By the time she finished the testing and figured out exactly where the weights should go, she could push me and I literally did not even move. I could just stand there. It was beyond what I was expecting! Furthermore, my dizziness and fatigue were both gone – I had recovered within ten minutes from my initial discomfort. It was a very positive experience with BalanceWear right away.

After the initial fitting session, how did you feel about BalanceWear?
I only wore the vest that first day for ten minutes in her office, but when I got home, the effects lasted all day. I was still walking at 11pm when my husband came home – I didn’t want to go to bed! My husband looked at me and said “you’re really walking normally, I can tell!” I was running up and down the stairs no problem. The next morning, the effects were slowly fading. From then on it was absolutely clear that BalanceWear was something I had to get. It was such an immediate effect. It was an incredibly powerful, life changing experience – I can’t describe it any other way. I felt like I was back to normal, back to how I used to walk. I’ve had issues walking, even before my diagnosis. To get walking back… people take walking for granted. It’s only when I couldn’t do it any more that I realized how important it was, for mobility, independence, and daily life.
What I realized later, once I got my own vest, was “I don’t have to think about how I’m going to take my next step.” Before, I had to map out my path, think about where I would place each foot for every step – even short 20-yard walks felt like the effort of climbing Mt. Kilimanjaro. But with BalanceWear, I feel like I have little motors in my feet.

How often do you wear the vest?
At the beginning, I was wearing it four hours a day. Pretty quickly I realized that I don’t have to wear it every day – I would still have residual positive effects the following day, so I started playing around with it. “How long will the effects last if I wear it for two hours? What about if I wear it every other day? When will I need to wear it next?” It blows my mind how it works, why it works, and how Cindy came up with the idea.

What is it like to wear the vest?
I can definitely tell when I’m wearing it, but it’s not cumbersome. It’s a positive feeling, because the plastic within the belt that goes over the front makes me feel strapped in – I feel that much more secure.
The only negative aspect is that in the summer it gets very warm because you’re strapped in and there isn’t much room for air to circulate. It can get uncomfortably warm. With MS, heat is one of the really negative outside influences – it brings on fatigue and dizziness, so even though the vest is countering your balance issues, you’re still dealing with the dizziness and the fatigue. A lighter vest would solve this problem.

What are you able to do now that you weren’t able to do before BalanceWear?
BalanceWear has absolutely given me a new sense of confidence in my abilities and my potential. I do still have symptoms that are not related to balance, and I’m aware that the vest is not going to fix those – it’s not a panacea. But I can walk normally, even jog. Before, jogging was not possible, but now, I can jog almost a half mile. I can go downtown to the farmers’ market and get what I need, without having to rest in the car for ten minutes before and after walking around. It’s such a simple thing, but believe me, it’s a big step forward.
What advice would you give to people wondering if BalanceWear is right for them?
Get assessed. Try it out, even if just in the PT’s office. You might feel right away if it makes sense for you or not.
I’m very open about my experience with BalanceWear and MS. If people want to get in touch with me, they are welcome to reach out to me, and I’d be happy to talk to them.

Why is it that some physicians feel the need to tell their patient you got this now live with it..there is no hope. What happened to the oath.. First do no harm? By telling someone they will not get better leads patients down a road that they and their families have do not want to go. as professionals we need to be honest. The fact is that many practitioners have not sought out alternative treatment.

In my video of Luke one can see that there is hope and improved function! November 20
Luke came to the US from the UK. The video shows improvement over 4 months.

Why is it that the medical profession feels the need to always cure a disease at the loss of research dollars working on treatments for patients that help them live better? We have research in MS. BalanceWear treats Balance dysfunction; not MS. Anyone with a Balance dysfunction may be helped.

BalanceWear Therapy has helped many people live better, fall less, and have more productive lives.

Why is it that our professions have relied only on evidence that only works in research. Research doesn’t look at the whole patient. It looks at a bunch of people who are not the same and only looks at certain measures researchers think COULD improve.

This is not life. We as clinicians tailor our programs for EACH person.

Please …..Do not let someone tell you to live with it until you have tried other treatments especially BalanceWear. I have heard patients from all over the world tell me no one could help them… They have been helped.

If someone can do something just a little better that is progress. Life can be very difficult for patients suffering with disability. Let’s try to make it easier

Boyd-I’m wearing BalanceWear® daily and still find it effective. Actually, what I should say is that I find it MORE effective: it’s nearly 3 months now, and some days I forget to put it on for a while and yet still notice the improvements. The brain plasticity kicking in, I guess.

Cindy- When you are able to do a task without the vest over time your brain has made a new connection. Neurons that fire together wire together. This is neuroplasticity.

Boyd- I’ve had a couple of falls, but no broken bones. They’ve come at the end of long walks, so I put it down to leg fatigue more than anything else. The falls have come after pushing it a bit too far (3 miles again) and then losing it on a sloping path. I’ve since reduced the walks to less than 2 miles (3 k) and will gradually increase.

Cindy- Boyd this is great. Learning what you do and how it affects your body is an important lesson. People with MS need to know when they are starting to get fatigued and listen to the body. I am sorry you had a few falls but glad you didn’t get hurt. By cutting back a bit and allowing your body to gain endurance before taking on longer walks will help in the long run.

Boyd- I got myself a couple of walking poles and have learned that the technique of Nordic Walking is a very particular method. To learn it, I have been going to a neuro Physio at a rehab center who specializes in MS and also in Nordic Walking. Only had a couple of sessions so far, I am already feeling the benefits.
Hiking poles can be difficult to master however after one does and uses reciprocal arms and legs movements are the closest to our regular walking pattern.

Cindy- Glad to hear you are working with a therapist as they can guide your best ability. BalanceWear gives many people like yourself a new starting point.

I enjoy reading new research on balance and how to help ourselves get better. Ball catching was found to enhance balance in seniors. The article discusses anticipatory control. When you catch a ball there is a small perturbation that happens right before you catch the ball. The body needs to anticipate by stiffening the muscles in order to catch the ball without falling over. Senior and other patients with neurological issue are not able to anticipate well. This skill can be worked on to improve control.

Here is an article about practicing strokes in tennis and the follow through movement making a difference in learning. Practice and repetition is associated with neural changes in the brain. How we practice makes a big difference. In the patient world and for those with disability BalanceWear can provide the balance control needed to practice correct movement. In some cases patients do not realize what is changing and can not feel the difference. An example I noted recently; a patient with cerebellar degeneration did not really feel the difference BalanceWear made in their walking however other people did. Every time she walked she her feet hit her walker because they were so far out to the side in wide base support. When she was wearing BalanceWear her legs were underneath her and did not hit the side of the walker during gait. She said she falls daily even in her walker. Why? Because she trips herself on the walker. She did not feel the difference with her legs underneath her but she is less likely to trip on the walker. Walking with her legs underneath her with a better base of support for many miles over the next several months should provide improved control as the brain learns more accurate movement.http://www.medicalnewstoday.com/releases/287836.php?tw

Man born in 1935 in Denmark.
Diagnosis: Cerebellar Ataxia
My sickness started slowly back in 2003.
The following 4 years my gait became increasingly worse and I started having speaking problems – especially in the mornings.
Treatment: absolutely nothing ! The neurologist at the Copenhagen University Hospital told me that there was no cure. It was a progressive sickness and the only hope was that due to my age the sickness would most likely develop slowly over the years.

I had to change my living from a big house with many staircases to a protected apartment. My walking problems became beyond endurance with daily falls and lots of injuries as a consequence.
Finally – spring 2013 I was instructed not to walk at all, and was submitted to a wheelchair. Doctor’s order ! By ordering this the doctors would for any reason avoid further injuries to me by falling.
This enormous change in my life style resulted in serious depression, which lasted about 2 months.

Motion Therapeutics (MT)

In my daily investigations in medical literature and information found on the internet I came across a publication from MT offering a balancewear vest.

The problem was that I had to travel to USA if I wanted a vest. I therefore started a market research within the international medical field in order to get more information about the vest. My sister is a doctor, and she helped me in my investigation.
I was in contact with the neurologists at the Copenhagen University Hospital, the University Hospital in Munich, Germany (professor Thomas Brandt who had diagnosed me), the Ataxia Foundation of Denmark and the Ataxia Foundation of UK.

Unfortunately I only received negative feedback. Many had heard about the balance vest but no one believed in its ability to stabilize these types of balance problems.

Meeting with Cindy Gibson-Horn (CGH) – inventor of the vest

Despite all the bad publicity I had obtained I finally decided to try to get an appointment with CGH in San Francisco. She was most obliging and asked me to have a video taking of my gait and send it to her along with the official diagnosis of my sickness.

In spite of my handicap – SAS and my daughter brought me in my wheelchair to the clinic of CGH in San Francisco. It took place October 2013, and it goes without saying, that Cindy (CGH) really took excellent care of me from the moment I “rolled” into her clinic. My daughter and I were

impressed by the efficiency and professionalism of her performance. After having pushed me around and tried to get me totally out of balance for some time, Cindy said the fantastic and unbelievable words “You don’t have to sit in a wheelchair”.

Cindy then started building up a vest, which would suit me and help me in keeping my balance no matter what kind of exercise I performed. We are not only talking about normal walking but I should also walk backwards and to the sides, pick up things from the floor, reach up for things far beyond my natural height etc.

Having “worked” with me for a couple of hours and placed all kind of weights in my vest on various places on my back, shoulder, stomach and front, Cindy told me that she had finished the job and I could start walking. First I tried within the parallel bars, and here I walked normal without falling to the sides or crossing my feet. Then I asked whether I was allowed to try to walk up and down the hall space ?

“You just try”, Cindy said. For everyone who have seen my gait before such as my daughter, we experienced a miracle. I walked without any problems, and I was even able to look to the sides when walking, which I haven’t been able to do for years.

Having embraced and thanked Cindy for the incomprehensible help I walked out of her clinic – leaving my wheelchair behind.

Upon my return to Denmark I swore that I would do my best in order to arrange that BalanceWear would be introduced to the Scandinavian market in order to help other people with balance problems.

If everything goes according to plan I am happy to announce that as from June 2015
Motion Therapeutics, BalanceWear will be available in all Scandinavian countries.

Wonderful! Not only Scandinavians but also other Europeans will then only have to go to Skodsborg Physiotherapy in Denmark avoiding the long travel to USA. If they are successful most likely MT will also have other representatives appointed in more European countries.

I have deliberately postponed this testimonial for half a year. I suppose that everyone will understand that in the beginning I could hardly believe that all of a sudden I was ”brought back to life”. I am so happy to report that since Cindy put on my vest I have become even better. In my home I am now frequently able to walk without the vest and my handwriting and speech have improved. I am more capable to use my computer, and someone might even claim that my intellectual faculties have improved.

On top of all this I am so happy to report (knock the wood) that I haven’t fallen one single time since Cindy put on my vest.

All in all a SUNSHINE STORY. Apart from what I have stated in this testimonial I am only too glad to receive inquiries from interested people. My mail address is: thorkild@erritzoe.com

FINAL PRAISE to CINDY:
Congratulation Cindy for inventing your simple solution to an extremely complex problem, a mechanical balancing of one biologically very complicated imbalance.

Exercise class

Exercise class

Causes of Balance and Mobility Impairment in Multiple Sclerosis

Multiple sclerosis is a progressive autoimmune disease typically diagnosed in young adults, affecting the central nervous system causing damage to the myelin surrounding the nerves and lesions in the brain. Although the disease progresses differently in each person often gait and mobility problems are encountered. Individuals experience many different symptoms such as loss of sensation, visual or vestibular function, spasticity, weakness, central processing and motor output dysfunction. Any or all of the symptoms may contribute to a loss of balance leading to difficulty in walking.
If you experience balance problems you should see a physical therapist who is knowledgeable in treating patients with multiple sclerosis. Many people in my MS exercise class partially funded by the MSFoundation find they are able to do so much more than they thought they were capable of. When people get the diagnosis that they have a neurodegenerative disease and experience a relapse many do not rehabilitate back to where they started. With proper guidance many of them are experiencing recovery of function that they thought was unattainable.